When Damian Santomauro was diagnosed with Asperger syndrome at age five, the paediatrician told his mother Damian would never marry and never leave home.

But Josie Santomauro was determined she and her son would prove that doctor wrong. And, 15 years later, it seems they are well on their way to doing that.

Damian is now completing a psychology degree at the University of Queensland, has a job at a laboratory and a steady girlfriend. He and his mother have co-authored a book about his experiences, Asperger Download, which they hope will help other young people with the condition negotiate the difficult path through adolescence.

"When I tell people that I have Asperger's, most people are quite shocked," he says now. "They say that I have perfect social skills, displaying eye contact as well as other things."

Simple social skills are often a struggle for people with Asperger syndrome, which means holding conversations, making friends and understanding social situations can be very difficult. (For more information on autism spectrum disorder go to the Autism fact file.)

For Damian, early intervention, speech therapy, the special education unit at his high school, his mother's support and  perhaps most importantly  his own determination to come to grips with social interactions have all played a part in his success.

But his path has not always been an easy one. Since childhood, Damian has battled anxiety and depression, and at one point he was hospitalised with suicidal thoughts.

For many young people with an autism spectrum disorder (ASD), the transition to adulthood is deeply confronting. Leaving the familiar environment of school, to face unfamiliar challenges in further study, work and relationships can be traumatic for people with an ASD, who often resist any disruption to routine and have difficulty understanding the unwritten rules of social interactions.

An unfamiliar world

Clinical psychologist Tom Tutton imagines the experience of the person with an ASD as being a bit like that of somebody adrift in an unfamiliar culture.

"I think of it as like being in Bangkok," says Tutton, who manages the behaviour support team at Autism Spectrum Australia (Aspect). "The customs are different, the rules are different, you don't understand people very well, and you're worried about getting it wrong and offending people."

ASDs are neurodevelopmental disorders that make it hard for people to understand the rules of social interactions and can see them engage in repetitive or obsessive behaviours. The best known disorders on the spectrum are autism and Asperger syndrome.

While the two disorders share many characteristics, people with autism have impaired language acquisition during childhood and may also have an intellectual disability. By adulthood, though, the distinction between those with high-functioning autism and Asperger syndrome may be largely academic, Tutton says.

Making the transition

The best predictor of a successful transition to adult life is a supportive social network, Tutton says, but that can be a hard thing to achieve for people who lack skills in communication and in reading other people's facial expressions and body language.

"Most of these guys do struggle to make social contact and then they become anxious and depressed," he says. "They've often learned that it's difficult to have good social interactions. They may have been bullied or picked on at school.

"So, to save yourself from being hurt constantly, you just hide yourself away."

Joining a social club or support group for people with an ASD can be a good way to address the social isolation many young people face, Tutton says. Aspect (the Autism Spectrum Australia) or your local state-based autism association may be able to put you in touch with a group near you.

Everyday tasks, such as buying a ticket on the bus or waiting in a queue, can also present a major challenge for some people with an ASD. Training in how to communicate with strangers, along with visual timetables, lists and detailed sets of instructions can often help people with ASDs to master essential skills, Tutton says.

The hidden curriculum

The many unwritten rules of social engagement are often a challenge for those with an ASD.

The rest of us  "neurotypicals", as people with ASDs sometimes describe us  have unconsciously absorbed what is sometimes called the "hidden curriculum", a vast set of unwritten rules that govern our day-to-day interactions.

If a friend is in a bad mood, we know instinctively that this is probably not the moment to ask for a favour or nag them about something they haven't done. If a stranger smiles at us on a train, we know how to respond with just enough, but not too much, friendliness.

"It's a world full of rules that we know by osmosis," Tutton says. "Take the urinal. If there's nobody else there, you can go to any one you like. If there's one other person, you have to go as far away from them as possible.

"Whereas somebody with an ASD might stand right next to the other person and… start talking to them."

People with an ASD need to learn these rules in the same way the rest of us might need to learn our multiplication tables

Meaningful work

When Thorkil Sonne's three-year-old son, Lars, was diagnosed with autism, the Danish father of three was appalled to discover the limited range of options for people with autism.

Too often, people with normal, or even above-average, intellectual capacity found themselves living under a bridge, unable to find a niche in a hostile work environment.

Sonne was determined to improve the prospects for his son, and others like him, so he abandoned his job in the computer industry, mortgaged the family home and established a business specifically designed to employ people with an ASD.

Key to his vision was a focus on the strengths, rather than the disabilities. of people with an ASD, Sonne believed  correctly as it turned out  that qualities such as attention to detail and the ability to complete repetitive tasks with unflagging accuracy would be valuable in the business world.

The company, called Specialisterne (The Specialists) to distinguish its employees from the rest of us "generalists" , now employs more than 40 people with ASDs. The first international branch is currently being established in Glasgow and Sonne hopes to see franchises set up in other countries, including Australia, over the next two to five years.

These consultants are more skilled at data entry and software checking than the rest of us, allowing them to be employed at market rates by some of the world's leading businesses, including Cisco and Microsoft. Although employing people with an ASD can require businesses to adapt their work processes and office environment, the changes are "not hard", Sonne says.

Both the business clients and the people with ASDs have reaped the rewards. One of Specialisterne's consultants had been unemployed for 25 years and had no social network before he joined the company, Sonne says. The man is now a professional software tester, goes to music festivals with friends, has a girlfriend and is standing for the local council.

"It's so fantastic what can be done if you provide some care, some understanding and set some expectations," Sonne says.

Changing the world

For many people in the autism community, the challenge is not so much to change those who have an ASD, but to transform our society so that there is a place for people who are different.

Traditional societies often had a place for those members who might have been considered slightly "unusual" but had specific skills or abilities that could contribute to their community.

"I hope we'll get back to a time when it was OK that people were different," says Sonne. "We have been narrowing the spectrum of normality too much and we have to widen it up again."

For Damian Santomauro, that battle to accept difference has been a very personal one. For years, he obsessively studied the way others interacted in social settings, determined to make himself "normal".

When he finally achieved all the goals on his 'checklist', he was shocked to discover that having a large number of friends and behaving like everybody else had not made him happy. In fact, he became so depressed during his final year of school that he was admitted to hospital with suicidal thoughts.

"Trying to become a neurotypical had been my life goal, only to disappoint me and nearly at the cost of my life," he says.

Through that experience, he came to a new awareness that he could learn the social skills he needed, while still valuing the things that set him apart.

"Knowing I am different from everyone else makes me smile," he says. "Because who wants 100 Fords when you can have a Ferrari."

Comments (3)

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John Hams :

25 Nov 2009 11:17:33am

Many thanks for a clear, concise and helpful article. As a carer for a high functioning ASD child, now about to start high school, I can sympathise with others who have to deal with this difficult disorder. As Tom Tutton says, the boundaries between other high-functioning autism spectrum disorders and Aspergers can be academic. What is most valuable is the information about organisations trying to carve a workable job and income for people with special skills and special needs. In our experience, - while schools acknowledge the condition, at the more subtle end of the spectrum, they have no practical accommodation of children who cannot see the social clues - who can and do inadvertently wind-up their peers, and who suffer the understandable, but highly regrettable responses meted out to them.I would encourage parents with "difficult" children to seek professional advice - and if appropriate, enlist the assistance of fine organisations like Autism Australia.

BD :

30 Nov 2009 10:25:45am

As an adult in his mid-40s with Aspergers I would question two assumptions in your article(1) ASD get better with age and(2) that ASD are neurological disorders rather than differnces.On (1) I have found yes things get better in your 20s but after that it is all downhill as your ability is not met with success, because everyone wants you to be a generalist rather than a specialist and on (2) there are things I am much better at than others, so it is not just a "disability"thanks for an interesting read

Sarah Calleja :

04 Dec 2009 9:36:58am

Many thanks for this helpful article which I think is a positive and realistic representation. As a psychologist specializing in relationship and sexual issues, I have helped many couples where the male partner has Asperger syndrome. I am impressed with their attention to sexual technique and how Asperger men who have been raised by emotionally intelligent parents like Thorkil Sonne are often quite gifted and generous lovers. The support I offer these couples is cultivating empathic skills and realistic expectations of their potential.